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Friday, 31 August 2012

My friend Stacey from Nobody Said it Was Easy was chatting about Foodie Penpals a month or so back. I had never heard of it, and then found more bloggers doing this great fun thing. You send a parcel of food no more than £10 to a fellow foodie lover. They then send to someone else, it's not a swap, so its loads of fun. You get to find out more about someone and discover a new blog too. It's great. If you want to know more and join in the fun the details can be found at Rock Salt.

I was very fortunate to be given Emma from Adventures of a London Kiwi (sadly she didn't send me macaroons!) a fellow Antiopdean no less, which was very exciting. Emma has the best blog header graphic I have ever seen, I absolutely love it, and I adore her blog. I am always jealous of blogs with great photography. Especially macaroon pictures. Emma took great care in reading my blog and sent me the most amazing package! My husband picked it up for me one night when I was working, so I was greeted by this at 11pm one Wednesday night.

I had told Emma that I preferred sweet over savoury, and she had read my blog and learned of my IBS diagnosis, hence the gluten free pasta (although its also a favourite of hers and she isn't gluten free). I loved my box especially the dried fruit and the Marshmallow Fluff. I had been dying to try the Fluff, but never had gotten around to it!

It was such a thoughtful box, and Emma was a fabulous person to be matched with for my first time around!

Thursday, 30 August 2012

When Joseph was about to be born, I felt optimistic. The obstetric team told me we would get a good outcome, they would deliver a live baby, and although the journey would be long, there was no reason to think we would not bring him home.

I am so glad I didn't know what I know now. I think what they told me, although happily was correct, was very dangerous. But hey ho. I put my Pollyanna head on and away I went.

I had a dilemma early on. What to do about my parents? My parents live in Tasmania, I live in Bury England. My mum and dad are pensioners and are not young, my dad is considerably older than my mum. Do I ask them to come over or not?

I talked it over with mum, and I decided against it. It's a very long way, and mum had made the trek just the previous year for my wedding. Dad was in his early 80's at the time, and has a number of conditions that make flying tricky, so would have to stay home. We agreed, it was too much of an ask, so we would come over to Australia as a family when Joseph was well.

Joseph was still under 2lb and in an incubator when I started making enquiries. I found good flights, and decided on a two night stay in Dubai on the way there, and one night on the way back. I was told Joseph might be discharged on oxygen and with a feeding tube, so I thought a stop over would be good to renew giving sets, recharge batteries, and if it was all a disaster, two nights to organise emergency flights home.

I asked a few of Joseph's doctors and most of them agreed that after Christmas, when Joseph would be 7 months old should be achievable.

It seems nuts now, but when Joseph was just 17 days old I booked that trip. I was very lucky to have understanding insurers who covered Joseph as is and didn't bother about the fact he was in hospital.

Having that trip booked kept me going. I had a kangaroo vest in 0-3 bought for his journey over. I took it in every Friday to show him how much he had to grow.

I recall one of the nurses saying to me "what if he's not fit to fly, what if the airline won't allow him to fly", and I calmly said "it will all work out, everything always does."

As each week passed Joseph got a little bigger, a little stronger, and the complications got fewer and farther between. I held out hope that we would make it on to that flight on the 6th January.

Days came and went, weeks came and went, months went by. None of the first consultant's opinons were correct. Joseph was not PEG fed, he had bottles and mush and sticks of food like any other 7 month old, and breathed the air that we do without any assistance.

That medical stop over became a very nice stop over, with a lovely hotel and a desert safari. And finally, we got "home" to mum and dad.

It was a funny trip. Joseph still looked like a newborn, I recall a father and his 8 year old daughter looking at me with horror as I fed him a soft roll on the plane. On the way home a very exotic woman, with limited English, stopped me at Abu Dhabi airport and said "cute baby, how old?", when I replied "oh he's now 8 months!" she looked in horror and said "he is very small, you take him to doctor when you get home" Not wanting to explain prematurity it in pidgin English I just smiled and agreed.

I am so glad I still had my innocence way back when Joseph was born. Sometimes ignorance truly is bliss.

Wednesday, 29 August 2012

Many moons ago Britmums had a Seven Deadly Sins blog prompt. At the time I was probably busy being Pollyanna and didn't make time to do a post, maybe I wasn't feeling it at the time. Who knows? But the time has come.

Envy.

Green with envy.

And its eating me up inside. When I was little I couldn't wait to be a mummy. My sister says I didn't play with my toys, I mothered them. I wanted to have my first child by 25 and be done with my 3 or 4 children by 30.

I didn't account for not being very good at pregnancy (or selecting male partners for that matter!). I had no idea that complications like miscarriage and then pre eclampsia would try to rob me of what I wanted most, to be a mummy. And don't worry, dear reader, I do count my blessings every single day for what I have, a perfect, healthy little boy. And yes, I do know that there are people out there who haven't got a baby at all, please don't make me feel any worse than I do.

But this envy is just eating me up from the inside out, and its awful. I don't know whether you've noticed, but there is a blogger baby boom at the moment. Gorgeous announcement photos and scan pictures appear everywhere. Joseph is asking every day for a baby.

I am genuinely happy for people when they fall pregnant, with number 2, 3, 4 or 5. But I can't help the little green monster voice "this is unfair, this should be you."

I feel like my life has been dictated to by pre eclampsia, by this evil shapeshifting illness. The pre eclampsia left me as soon as my baby was removed from me, but the ramifications remain long after the magnesium sulphate drip is removed.

All my body wants is to be pregnant again. Troublefree of course, with a lovely fat term baby at the end, who comes home with us. It's a fantasy that will never happen. But a fantasy that is reality for others, which strikes me as being utterly unfair. Why me? Why us? My husband puts a brave face on it, but he's feeling it too. We just want another child. Is that so very much to ask?

When I am not feeling sad and envious I try to use my time positively. I am knitting more and more, I have made a gold scarf, more than half a baby blanket and am just finishing a nice warm scarf for me, with more projects in the pipeline (stay tuned for knitting week!) I blog, and support others. I also do my work for Tommy's.

Because I am not alone. There are thousands of women being dictated too by pregnancy complications, who can't choose the family size they want, who haven't got a baby to hold at all.

Research is key, but so is support.

I guess I will always live with this envy, I doubt it will ever completely go away.

Tuesday, 28 August 2012

The ASDA Baby and Toddler Event is running from 27 August to 16 September. ASDA are aiming to raise £100 000 for Tommy's the baby charity. This is a great time to help Tommy's and save money too!

Joseph loves nothing more than playing doctors. He says when he grows up he is going to be a baby doctor and help the sick babies get better.

Here is my little doctor at work, giving the babies their medicine. That carrot is, actually, a cpap tube to help the baby with their breathing. I am amazed at the level of detail Joseph goes in to! He seems to know a lot about neonatal baby care, so who knows? Maybe he will, in fact be a doctor. Just as well we're increasing his Child Trust Fund every year!

Joseph must realise that he is here today because of the amazing doctors, nurses and other medical staff who helped him. I was on first name terms with the pharmacist, audiologist and health care assistants! But Joseph is also here because of Tommy's.

When I was little all I ever really wanted was to be a mummy. I had had miscarriages, weird diagnoses, and finally carried Joseph but only to 27 weeks. There are brilliant pre eclampsia protocols in place, based on medical research, and this research, thanks to organisations like Tommy's, is ongoing, and improvements are being made to baby care all the time as a result.

However the miscarriage, stillbirth and premature birth rates in this country remain unacceptably high. I am of the belief that research, and carrying this research through into the care of pregnant women, is key to reducing this.

Every mother and father has an expectation that they will see that little image on the ultrasound screen be born, take their first steps, speak their first words, and achieve their dreams. Sadly this is often not the case.

Simply by choosing to buy your baby goods at Asda in the next few weeks, you could help mums and dads like us bring their babies home.

Friday, 24 August 2012

I have a growing community of bloggers who have experienced NICU, most of whom have guest posted for me. I hope over the coming weeks that I will be sharing more from them, as I would love nothing more than to build this community, as we are all so different, all with amazingly different viewpoints. Having a premature baby or sick baby has united us, but its our friendship and unique trench humour that has made us strong I think.

Yesterday I did this guest post at Mummy Pinkwellies. Of course Leanna over at Diary of a Premmy Mum had to go and pinch half the title, and even worse, write a better post! I jest of course, I love how we bounce and share ideas off one another.

I find I often can't explain why the NICU experience hurt so much. Sometimes parents who haven't been through NICU just can't understand the emotions that go along with having a premature baby. These thoughts have been bubbling away for a while.

When you have a term baby, you have a large degree of autonomy straight away. You are making decisions (often scary ones) immediately. I can't imagine what that must be like. How to feed, when to feed, how much to listen to your baby or your own instinct, how to dress, how to sleep your baby, so many decisions.

When you have a premature baby, or a sick baby, you immediately become disempowered as a parent. Your baby is taken away and put in a box, and that's it. Yes, you express if you can, but you can make absolutely no decisions about the basic care of your baby.

Of course, its medically necessary, and I'm not saying for a moment that it isn't. The premature baby needs specialist input, the baby needs the charts, the protocols, the procedures.

As your journey with your premature baby progresses, you are an integral part of the babies care, but there's a barrier. You have to ask permission. You have to fit in with the hospital's guidelines and protocols. It can be sould destroying. Nurse A may let you have kangaroo care whenever you want, nurse B may not. The head nurse of our unit wanted Joseph's monitoring turned off for kangaroo care so that a) I was learning Joseph's cues and b) trusting my instincts and c) the machine wasn't giving off false readings every 2 minutes. But this scared most of the other staff and would not allow me to switch it off.

I, like many other mothers of former NICU babies, really struggled when home. Should I pick him up if he cried? He seems hungry but feed time isn't due yet what do I do? He's unsettled, is he being a normal baby or is there something wrong?

A good unit will work to empower mums and dads early on, but this practice is not yet widespread.

Perhaps the key then is good, sound peer support and empower one another to parent.

Thursday, 23 August 2012

Joseph's language never ceases to amaze me. I love the way he talks, his hilarious little accent which is a combination of Lancashire, Bury and Aussie. I love that he still has little quirks that only we understand.

"Mummy?" a litte voice says, standing next to me as I switch on the computer. "I want to speak to grandma in oo garden".
"Yes Joseph of course, lets take a look and see if she's there". I find oo garden and click video call, and there she is.
"Grandma! Grandma!" Joseph shouts excitedly, "You are here in oo garden!"Oo garden = Skype

"I really want to go the summer house mummy, then we can play at the pirate play ground and go swimming and eat icecream", Joseph says excitedly. "Can we go? Please please please?"Summer house = the house in Great Yarmouth owned by my in laws. We also have the German summer house, their home in Germany.

"Let's go to the football house mummy, it's fun!"The football house is the pub down the road with a beer garden, climbing frame and bouncy castle!

"Mummy its Friday, should we go to the cafe or have chicken bucket? We could go to a normal cafe/Cafe = Macdonalds; Chicken Bucket = KFC and a normal cafe is any eating place that isn't either of the previously mentioned establishments

"Mummy I am trying to play, go away! Get back to your cannerpoo and leave me alone!"Cannerpoo = computer

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I currently have a guest post over at Mummy Pinkwellies today, and would love if you could check it out and perhaps comment. K is a dear blogging friend, I love her blog, and it would be great to see you all over there. Leanna at Diary of a Premmy Mum has written an amazing post in a similar vein and I want you all to read it, please!**********************************************************************************
I would love to get some feedback about my blog and where you would like to see it going, what sort of posts and features would you like to see. I feel I need a bit of a change in direction and would love some feedback from you, my readers, about what you would like to read, what sort of topics you would like me to cover etc.

Wednesday, 22 August 2012

Joseph has been attending our local preschool since last September. This year he will now be a big boy attending 5 mornings a week. When the kind people asked me to look at their uniform range, I was more than happy to. I am wanting to send Joseph more formally dressed this year to get him used to wearing a uniform.

We were given £20 to spend, with which I bought a pack of two polo shirts, some brown trousers with adjustable waist, a blue jumper and a winter, fleece lined coat (which Joseph steadfastly refused to model on the basis that "it's summer mummy". I have to confess to shedding a tear to see him so at home in such formal school wear, another reminder that my little dinky dot is growing up fast.

From a premmie mum point of view I am impressed that the trousers fit, as did everything else. The smallest size was 3-4 years, and they fit fine. They could do with being taken up a little, but if you have a skinny minny like me, definitely try George at ASDA. Joseph also said "my new clothes are very comfortable mummy".

We were also given a plain bag to decorate and go wild with. Joseph is not into design yet, but I have to say, I quite like his Impressionist piece and he certainly had oodles of fun doing it! I think the use of colour, brushes and different techniques is most impressive, and you can certainly see it is all his own work! I resisted the allure of a blank canvas (bag) but might just seek my own out......

I was given a £20 allowance to spend online on the George at ASDA Back to School range as well as the canvas bag and some paints and crayons. All opinions are my own (and Joseph's!)

Friday, 17 August 2012

I am reposting this about Skye, my friend Ruth's daughter born at 27 weeks gestation just a couple of weeks before Joseph. She has spastic diplegic cerebral palsy. Skye has recently had a consultation and her team feel that she would benefit from a surgery called Selective Dorsal Rhizotomy. Skye's mum Ruth will do a more in depth post about this at a later stage. In summary SDR is performed regularly in the States where it is accepted as a treatment for this type of cerebral palsy. NICE, the body that assesses and approves procedures, has stated that there is insufficient evidence to approve this surgery. This means that parents need to self fund this procedure.Skye's family need to raise £40 000 for this surgery. I would be so happy if readers of my blog could help to make a dent in this figure. I also hope to do some fundraising events too. If you are in the position to help please do so here.

Thank you so much for reading. I have met Skye a couple of times, and she truly is a gem of a child, and extremely bright, and I know she would benefit so much from this surgery.

Skye's Story

Everything progressed normally with my pregnancy as 2009 began. I was excited, but refused to get too emotionally attached to the baby growing inside me until I reached 24 weeks – viability in my eyes. Also, I didn’t like to decorate, etc ‘just in case’. There was absolutely no reason to think that the pregnancy would be anything other than perfectly routine and unexciting, but still the magic 24 weeks seemed to take forever to arrive. After 24 weeks we began to prepare the house for the baby – beginning with our room as that would be where baby would spend the first few months.

During the Easter holiday I mucked in with preparing the bedroom for the plasterer - I scraped wallpaper off the walls. As the first week went on I began to get some pains at night. It was waves of discomfort, not unlike period pains. It would ease off overnight, so I chose to ignore it and assume it was just pains as my body adapted to its extra passenger. I did begin to do less DIY though! We went away with friends over the Easter weekend. Whenever I did too much walking the pains would increase, but by morning they’d ease off. I phoned the delivery suite at the hospital once we were home, expecting to be told it was perfectly normal, and instead they told me to come in. I went in and they monitored me for a while before telling me that I’d simply done too much DIY and I should go home and take it easy.

On Monday 20th April 2009 I went into work. Throughout the day I was having waves of pain so severe I could barely stand straight. I kept reassuring my colleagues that it was simply that I’d done too much over the holiday, that I would be fine in a while. That night they became even more painful and I experienced a small amount of blood loss, so I called the hospital again. Back in we went! They monitored me again and told me it all seemed fine but that the consultant would take a look.

He told me that they were going to try to stop my contractions, that I had very little cervical length left and that they were going to give me steroid injections and send me to the larger hospital 7 miles away. His words were ‘Your first goal is to get there without delivering!’ At this point terror began to set in – I was 27 weeks pregnant and suddenly someone was talking about contractions and having a baby! Luckily the drug they gave me to stop my contractions worked and as the ambulance drove the 7 miles, my contractions slowed down and stopped.

The next day the consultant came to tell me I had an infection and would have to deliver the baby the following day. However, he also added that there were no special care cots available, and that the nurses would have to phone the hospitals around to find one which had space and facilities to cope with such a small baby. 4 hours later, I was told I was transferring 75 miles to the closest hospital they could find with space!

I was transferred by ambulance and once there they told me they wouldn’t keep giving me the drugs to stop labour. Apparently it wasn’t the way things were done in this PCT! The next day passed in a haze of monitoring, at the end of which they told me I didn’t have an infection, I didn’t need to deliver the baby and so they were going to send me home the following day – after a more detailed scan of the baby as it was measuring small for my dates.

That evening, the familiar aches started again. By midnight they were really ramping up and there was more blood loss. I called for the midwife who told me that I was fine – I wasn’t having contractions at all and not to be silly. When she realised how regular they were she decided to call a doctor to do an internal exam to check all was fine. I was 3cm dilated so we headed down to delivery!

By the time they had found a heartbeat, I was fully dilated and ready to deliver. I was told to push with the next contraction, so I did. I remember the midwife saying ‘Slow down!’ and thinking ‘How am I supposed to do THAT?!’ before the midwife caught the baby! I was thinking ‘It’s pink! It’s screaming!’ I hadn’t expected either of those things. As the baby was put inside a plastic bag to retain warmth and moisture all I could see was arms and legs pushing against the bag, and I thought ‘Feisty – a good sign!’

The midwife suddenly thought to ask whether baby was a boy or a girl and we were amazed to hear it was a girl – we’d assumed it would be a boy! By the time we had agreed on her name – Skye Elizabeth – she had been ventilated, packaged in a plastic bag and incubator and was on her way upstairs to the SCBU ward.

I was able to stay in the hospital for a week, at which point they had to discharge me. Luckily, due to our circumstances, my husband was also permitted to stay in my room for the week. After that we were left to find ourselves hotel accommodation. We spent each day at her side, updating friends and family daily through a photo website.

We had been warned that there would be good days and bad days. The first bad day was on Day 4 when we were told she had an infection and needed a blood test to check her out and she might need a blood transfusion (luckily antibiotics worked quickly and she needed nothing else). After this, however, we only seemed to have good days – the doctors were all really pleased with her, and she was doing very well. This in itself made me feel guilty – I could see friends we had made in Special Care going through tough times with their babies, while we were having an ‘easy ride’. All we wanted was to have her closer to home!

3 weeks after her birth, we received the news that she was being transferred back. We had to learn the routines and rules of the new unit, but we were so pleased to be home. Exactly one week later she was transferred again – from the higher level care at the larger hospital to the local SCBU ward. I remember the feeling of shock I received when a baby went home from this room – it was a room babies went home from – soon it would be our turn!

We spent 5 weeks in that ward. They felt like forever. We gave her her first bath, we tackled breastfeeding, she moved from incubator to hot cot and then to a normal cot. We even tried ‘rooming in’ to prove she was ready to go home. What a disaster! We stayed in a room on the ward, and had Skye in with us. She didn’t sleep, wouldn’t feed and simply screamed the whole time. At 4am I took her to the nursery in desperation and sobbed as one of the nurses cup fed her for me and suggested I go back to the room to get some sleep. I felt useless – I was her mother but I couldn’t feed her or look after her.

Throughout the next week, however, her breastfeeding improved and we began to think that we might be going home soon. A few days later, I went into the unit and was told she couldn’t go home until she’d done 24-48 hours without her feeding tube in, that she refused to cup feed anymore because she wanted to suck and that I should agree to let her have a bottle overnight otherwise she wouldn’t feed. I was reluctant but was about to agree because it was the only way I could see of getting her home.

Another nurse came along and asked me if I wanted to take her home. When I said yes, she persuaded the doctor on the round that Skye was ready to go home, that she would feed fine once we were home, and that he should discharge her.

At 4 o’clock on Friday 26th June 2009, we left the SCBU for the last time – but this time we took our daughter with us! She was 9 weeks and 1 day old, which made her 36 weeks and 5 days gestational age.

Thursday, 16 August 2012

I started thinking about this post yesterday after coming home from the doctor's with Joseph. I thought it would be a funny one about how my appointment went, which it has to be said, was hilarious. So perhaps we'll start with that. However this post has a serious side too, and I really need some help.

Late last week I started bloating and getting stomach pains. At first I thought it was my period starting, however it became apparent with every passing day there was something going on. I now look far more pregnant now than I ever did whilst actually pregnant. The pain is ever present. I am exhausted. So exhausted, bone crushingly tired.

Joseph normally attends preschool 3 mornings a week, but it's term time only. I never thought I'd be the sort of person to moan about summer holidays, but my lord it's been tough. Joseph's sleep pattern is changing and he's potty training, and I'm finding these two things tough to deal with on my own. I have work, my health and social care diploma, my blog and my charity work all on the go, and like most mums am dashing about spinning plates in the air hoping to God none of them smash on the floor.

I decided the time had come to see the GP. I had to take Joseph with me. Of course, because this GP is so wonderful, she's always late. So Joseph soon tired of the bead table and decided to tell everyone about his poorly mother. Thankfully the doctor soon appeared. Joseph took over for me "doctor doctor mummy has a very poorly tummy, you must fix it!". As she got me on the bed to examine me, Joseph was beside himself with worry. The doctor reassured him that I was ok. I have a provisional diagnosis of Irritable Bowel Syndrome (IBS) and a prescription for Omeprazole and peppermine oil capsules.

I took Joseph out of the room and he dashed off into the waiting room, I assumed to have one last go at the bead table. Wrong. The waiting room is set out like a theatre with 4 rows of seats. It was heaving. Joseph took centre stage "Everyone, Everyone, please listen to me, mummy has seen the doctor and she has....." I quickly scruffed him, the audience was in hysterical laughter. Mortified is not the word.

All the stress started with our summer holiday in the first week of the summer break, which did not go to plan. Since then I have been feeling really stressed trying to be all things to everyone.

I am in tears writing this. I know, really, in the grand scheme of things, IBS is no biggie. I will learn to manage it, what to eat, what to do when it flares up etc. But its yet another chronic ongoing condition to add to my asthma and essential hypertension.

I'm in the process of reassessing how I manage my time for the next few weeks. I am going to trial posting less. I am putting myself under stupid pressure to post everyday. That is unnecessary. I am going to do a few review posts that I have outstanding and just post on pressing matters until preschool goes back, and then reassess again.

I really need to find some Kylie time. I can't tell you when I last did something just for me. I've always been good at getting the balance right, but lately I've failed. My hair needs cutting, I need new clothes (once the bloating has gone!) and I need to just "be". I am finding things such a strain, and perhaps the IBS needed to happen to give me a kick up the backside (no pun intended) and to slow down.

And, by the by, peppermint tablets are weird. They are enteric coated so they don't dissolve til they hit your stomach, but then you can taste peppermint all the time, which is well weird! It's like constantly having a trace of toothpaste in your mouth.

If anyone has any experience or tips in dealing with IBS that would be wonderful.

Tuesday, 14 August 2012

The Olympics has been amazing, and I've really enjoyed it, far more than I thought I would. I adored the bonkers closing ceremony too, but once Brasil had safely taken possession of the Olympic flag I went to bed. I missed the appearance of Take That.

Now I have to say I am not a fan. In the 1990's I was listening to indie on JJJ in Australia and they just weren't on my radar at all. When they reformed I was amazed at my friends going weak at the knees and fighting for tickets to concerts!

When Joseph was in hospital I had a collection of songs on my iPod that I had downloaded. I was expressing one morning and this song came on.

(Note: this footage is NOT from the Olympic Closing ceremony)

Without realising, I had tears streaming down my cheeks and then started to sob, it hit a nerve, and now every time I hear it, its like a Pavlovian response. That song, I know, means a lot to people who have lost babies, or have had premature babies. It resonates.

On Sunday night Take That performed that song. Speculation had been rife that Take That would not appear, as Gary Barlow and his wife Dawn had sadly lost their baby Poppy, stillborn, in the week prior to the ceremony.

As can be expected there have been some snide comments on the internet and some, that quite frankly if they appeared any other media would be libellous, about how its a contrived performance to help secure Gary's knighthood, how he put money before his family (the fact that the acts weren't paid for their performance seems to have passed the hairy trolls by)

No one has put it better than Jason Manford about these sad bastards with nothing better to do than pour hate onto somoneone's grief.

But, and here lies the point of this post, there is more than one way to grieve. I've now watched Gary's performance on that night with Take That (with tissues). I think, personally, it's clear he was singing that song for his wife, for Poppy and his children, his mind wasn't on the Olympics, it was on them. What better tribute for Poppy, his beloved daughter, than singing in front of a world audience.

Grieving is an intensely personal experience. Some people need to curl in a corner, stay in bed, hide away. For others getting out there, keeping on going, is helpful and what they need to do to make sense of what has happened.

Like it or not, Gary Barlow and Take That are national treasures. He did what he had to do and did it well, with grace.

My only little nagging concern is that sometimes we have such a "keep calm and carry on" mentality that emotions are suppressed, grieving doesn't take place fully, and then there's pressure, especially on men, that they should just shelve it all and get back to work.

There is, most definitely, more than one way to grieve, and for those supporting those that grieve, our role is to nurture, to understand, to empathise and support.

Haters are going to hate I suppose, but we are seeing too much of this.

Monday, 13 August 2012

There's a silly funny Britmums blog prompt today which I thought might be fun to join in on and would love to hear some other ideas too.

So the Modern Pentathlon - Fencing, 200 metre swim, Showjumping, 3 kilometre run whilst stopping 3 times to shoot a target. Pah! Easy!

The challenge the lovely Karin who blogs at Cafe Bebe suggests we design our own parenting pentathlon! I think to truly reflect the Herculean effort in being the parent of a premature baby we would need more than one round.

Premmie Parenting Pentathlon round 1 - Intensive Care Unit

Express a pot of breastmilk, whilst checking Facebook and phoning the unit to see how your baby did the night before.
Run into the unit, dodging doctors, nurses and any other obstacles to see your baby.
Wash your hands, 3 times, with antibacterial soap, whilst catching up on the latest update, taking note of billirubin levels, CRP results and agreed action plan.
Change nappy, through the incubator portholes, with foot probe, umbilical line and long line in situ. Points will be deducted for allowing wee or poo to escape into the incubator.
Find a spare breastpump and pump a pot of milk, without being seen by any said doctors, nurses or other passers by, leaving it for your baby before preparing for round 2.

Premmie Parenting Pentathlon round 2 - Nursery/SCBU

This is day 50 so bear in mind you are already fatigued, worse than Mo Farah doing the 5000m.
Catch bus one to Bury Interchange, change swiftly at Bolton Interchange, a quick changeover here is essential, arrive at hospital.
Sprint up from the bus stop into the unit, avoiding any delays on the way.
Prepare bottle (or breast as appropriate) for baby, ensuring you comply with current millage requirements, mistakes here could prove costly.
Feed baby, avoiding all distractions, wind by chosen method preparing arguments for the 5 nurses who will tell you you are doing it wrong.
Place baby back in crib. Any vomit at this stage will incur massive penalty points.

Time starts when you are given discharge plan.
Calmly leave unit rushing to Boots and Mothercare, buying crib, carseat, layette and essentials.
Arrive at unit and complete your neonatal resuscitation training. Panicing at this point will be costly.
Find the rooming in room and set up to your satisfaction.
Obtain pre-prepared baby and sit. First one to move and do something loses.
Spend night with baby, points are awarded for every successful hours sleep you have, with gremlin sounding baby.

Premmie Parenting Pentathlon round 4 - Homecoming

Bring baby in front door, and show around the house, talking continually.
Set out medications, formula, any agreed charts, syringes and other equipment.
Take baby out, it is imperative no one touches the baby - approved Olympic standard methods are sling, pram or baby carrier, rain covers are allowed.
The antibacterial swoop - someone will, inevitably, try and touch the baby, points are awarded for the fastest production and successful application of antibacterial gel.
Time and person management challenge, arrange visit from neonatal outreach sister, delivery from pharmacist (who will subsequently send you Christmas cards), and visit from Auntie Agnes whilst feeding baby on 3 hourly schedule and tending to your own needs.

The Premmie Parenting Olympic Committee have decided that anyone who achieves all this, regardles of time, will be awarded a gold medal, in the form of a rewarding smile from your precious baby.

Sunday, 12 August 2012

At the end of May I did the Bupa London 10 000, through the streets of London. Before the race as we all gathere, all talk was of one runner, Mo Farrah.

What I love about running is its inclusivity. It doesn't matter where you come, unless you are seeking Olympic selection, it's all about personal bests, about the buzz, and for a lot of us, about fundraising.

I am not a runner. I was always the slowest at school, cumbersome, wheezy and most unathletic. The irony was, I always enjoyed PE, and playing sport and attempting to run, but found that I struggled. It seems amazing now that more and more children are asthmatics, that in my class I was the only one.

Back to our Mo. Mo finished that race well over an hour before me. He passed me though.....running the other way doing his cool down, looking like he could quite easily do another 10k! When I was watching his runs in the Olympics I just felt so proud! And proud too that I have got off my considerable rear end and done a 10k too, if not as fast and in as much style as our Mo!

I think Mo captures our imagination because he's a genuinely humble, lovely guy. He came to this country with nothing. He's worked hard to overcome a language barrier, he's also overcome bullying too, I heard a very interesting interview by his PE teacher from school, about how he tried to get him running instead of hanging around getting into trouble, and recognised his talent.

Mo has gone on to succeed in the 10, 000k and the 5, 000k and also to establish his Mo Farrah Foundation
working in East Africa.

Like most of the country, I have been held captive by the Olympics. I have loved every minute of it, and it's been amazing to see London light up, and come together. It's also been amazing to hear some truly inspirational stories of triumph.

I can't wait for the Paralympics, where I am sure even more amazing stories will come out.

So thank you Mo, and all the other incredible athletes who devote their time to training, competing and inspiring us all.

Saturday, 11 August 2012

It's no suprise to readers of my blog that I am a huge fan of TKMaxx, so when Britmums asked bloggers to take part in a £30 challenge, I was very excited. The challenge was to create 3 fun looks for £30.

Here's what we bought

* A pair of incredibly cool jeans
* A snuggly zipped hoodie complete with "London" motif, very apt
* A long sleeved top with "The Rewards are Well Worth The Effort" print
* A beautiful v necked green t-shirt with a summery ferris wheel print
* Grey t-shirt with incredibly on trend campervan print

I started with the jeans and made these the base for all three looks.

A late summer walk

Up here in the North West, you always need to layer up, and I thought this jacket was ideal. And when it gets too hot, you can toss it!

Football with the Lads

This top was the first thing to fly into my hand when I walked into the store. I really loved the colour, the cut, and the slogan is just awesome. I wish I could convey just how soft the fabric is, it feels so comfortable on the skin, I want one for me!

Baking with Mummy

We are not apron/pinny people, so for baking I went for short sleeved, bright coloured, easy wash! The bowl just so happens to be from an earlier trip to TKMaxx!

The Experience

We went to our local store on a Thursday morning. Joseph had great fun playing with the toys whilst his personal stylist (ie me) perused the rails. There were plenty of staff around to help, and everything, as you can see, was well organised and laid out. I do love our local store so much, it had a big refit several years ago now, and is just a joy to visit.

Joseph did come and check on me from time to time and he found the awesome jeans!

So much did we spend? £29.98! Am I good or what? You have to agree that is remarkable value for 3 tops, jeans and a hoodie, and I estimate (the original prices weren't on our garments) that I must have saved at least £70.

The range in store was really great, and the girl range was really lovely too. I'd highly recommend TKMaxx if you are looking for an outfit for a small person.

Friday, 10 August 2012

What do you think of when you hear the world ultrasound? I am sure one of the first things that springs to mind is having your 12 week and 20 scan, seeing your baby for the first few times, wondering at that baby growing, moving and doing baby things like weeing and sucking its thumb.

What you may not know, unless you have had a baby in special care is just how important ultrasound is on the neonatal unit. Joseph had several head scans, to make sure that he hadn't had any bleeds. As Dr Donovan Duffy, Neonatal Consultant at St Georges Hospital Tooting explains, ultrasound plays a vital role.

St Georges is a hospital close to my heart as many of "my babies" have been through this unit and I wanted to help raise awareness of this campaign. If you can help please donate to the campaign here. Every little helps.

"The
neonatal unit requires a new ultrasound scanner to replace our current scanner
which is over six years old. The new scanner will cost approximately £50 000.
The investment in a scanner with high specifications will take into account the
latest developments in imaging technology. This will allow us to meet our
increasing workload for the anticipated lifetime of the scanner.

Ultrasound
is a powerful diagnostic tool in constant use on our neonatal unit each day. Unlike
other available imaging techniques (X rays, CT scans and MRI) ultrasound is
portable, readily available and safe. It does not involve radiation or require
sedation. A picture of an ultrasound scanner and examples of ultrasound images
are shown on the following page of this proposal.

Heart: assessment of newborn heart
structure, function and response to treatment of the newborn circulation in
unwell babies.

Abdomen: diagnosis of organ
structural abnormalities particularly in babies referred to us as a
neonatal surgical centre.

Ultrasound
development has resulted in ongoing improvements in image quality and new
applications for use. The Royal College of Radiologists publication on
‘Standards for Ultrasound Equipment’ states that ‘because of rapid changes in
technology, changing clinical expectations and needs, review and replacement (of
ultrasound equipment) is typically undertaken four to six years following
installation’. Our current ultrasound scanner was developed in late 2004 and has
been installed on the neonatal unit since March 2006.

Improved ability
to visualise blood vessels and place lines in vessels for long term
medication and nutrition-

NICE guidelines state that placement of lines in central vessels
should be performed under ultrasound guidance as this leads to a higher success
rate with less complications (such as infection and leakage). Ultrasound guided
line placement is a standard of care in adults and older children. We would
like to make this routine practice in our babies. This would allow fewer
painful attempts at line placement and fewer babies needing to go to theatre
for surgical placement of lines.

Up
to date ultrasound equipment will most accurately inform our management
decisions and counselling of parents. A new scanner will enable us to maintain
and improve the quality of care we provide to a growing number of babies."

Thursday, 9 August 2012

Oh potty training, how I love thee. Leaving the security of nappies for the wide world of character underpants, and free roaming willies. I have to confess, I have put it off for as long as I can, potty training and this post. And it's one of those that I am going to have to delete before Joseph can read online! But after the quite tough content on my blog this week I think we could all do with a bit of a giggle.

So the good - Joseph is abandoning the potty.......for the dunny, you know, the loo. Which is amazing, except it sounds like an elephant is crash landing on my house everytime he goes. We have a wooden seat, which he throws upwards with a great big thump, then puts his little training seat on, then throws the lid down, climbs on and wees! It is quite a performance. But at least I have one man in the house who can manage to put the seat down!

When we are out, he is fantastic. We were at our Bliss Little Stars group the other day, and Joseph, at that time, had been potty training for less than 2 weeks. He popped over to me, abandoning tipping sand all over the floor of the playroom (who puts a sandbox inside??) and came up and said ever so politely "mummy I need the toilet please" and away we went. Out and about we have had very few accidents. The only thing is, I go to the cubicle with him, help him with the loo, and he announces loudly "I have done a wee on the toilet, tell me I'm wonderful" cue stifled giggles from other women in the public loos.

Clearly this situation of wee is assisted by the fact that willies, apparently, are wonderful fun. When out walking often I hear a little voice saying "mummy I need to wee on the grass", so we find a secluded spot, and off he goes. Only unchecked the willy has a life of its own, a situation I am sure does not improve as they get older, so needs a little guidance. Another to my list of "job roles I never thought I'd have" - willy tamer. I have to say, I do hope we get a good covering of snow this year!

The bad, quite seriously, is poo. I have no idea what to do about poo. This is gross and disgusting, so if you are eating, stop, either reading or eating. For the first few days my little cherub would come up to be and say "mummy I need a baby wipe", stupidly I would ask why "mummy......there's a poo in my bottom". No amount of explaining that the potty or the loo is the place for poo seemed to work. After day 4 it got better, but worse. "Mummy I've done a poo", "oh ok, where?" I would ask. "On the carpet". Great, we have laminate throughout with one tiny bit of carpet. Fabulous.

Just over a week and Joseph did one in the potty! Much dancing and cheering and clapping, and Joseph was so proud of himself, and I was proud too. Sadly, a one off. On more than one occasion I have been tempted to reach for the nappies and go back to the security of something other than me between poo and the outside world. I know, I know, like a troop on the front line, onwards I must go.

Today we were at the playground. Suddenly Joseph stops trying to steal other cherubs icecream (mummy fail, we got to the park just as the iceream van was leaving), and comes to me quietly. "Mummy I need to change my nappy". Oh no. Poor Mr Bump undies. Home for Joseph and rubbish bin for said undies.

We will get there, I am sure, and he's such a star with wee, and progress is being made in the poo department.

Wednesday, 8 August 2012

Today I have a guest post from a blogger who has become a very important person in my life. Charlotte's story about her son Adam is truly inspirational. You can follow Adam's journey at Walking for Adam. Charlotte was a carrier of Group B Strep, but like thousands of pregnant women, did not know it. What happened next was terrifying, and the consequences of this infection still affect Adam today. I would like you to read Adam's journey and sign this petition. The petition is closing soon, so please sign to get this issue raised in Parliament.

Tuesday, 7 August 2012

Today Joseph should be turning 3. Ok I know not that many babies actually make an appearance on their due date, but the vast majority are born within a couple of weeks of it, not 13 weeks early. Not only did his due date look cool 07/08/09, but he would have shared his birthdate with his cousin, Livi.

I feel like I am the only person in the world for whom this date is significant, in terms of Joseph's life. Everyone else has, and I suppose, quite rightly, moved on. His birthday is May, and May it is, it's only me that feels a desperate sadness every August.

As my blog, and my work in our gorgeous premature baby community has grown, I find myself talking to a lot of parents at various stages in their journey. I listen, hopefully, more than I talk. And I try to reassure. "Let go of the guilt" I say. "This is not your fault" I say. "You wouldn't blame me, I don't blame you, so don't blame yourself" I say.

But as I write this, the guilt and the sadness is overwhelming. It does seem weird, when Joseph is fine now, well, apart from his pooing issues, but that is a (funny if gross) tale for another day. He is fit, and healthy, and developmentally, just fine. He is better than fine.

But I feel guilty because the last 3 months, I have been back there again, living it everyday, that journey we went through, the hardest, but most amazing time of my life, watching this tiny little creature grow and develop into a clever, beautiful, headstrong and bossy little boy. Being seperated from my little boy every day, watching him in that plastic box, seeing the procedures, having awful conversations with doctors that no parent should have to have, it's hard not to keep reliving it.

When your living it, you have no time to dwell on it. Expressing, hospital visits, eating, keeping life ticking over, takes so much energy. It's only later you have time to consider everything. And I still haven't come to terms with that time.

There is sadness too, because Joseph nearly didn't come home with us, and I can't imagine life without him now, it hurts like hell to think of existence without him, so I don't think about it, except this one day.

And then, there is that whole other can of worms, the survivor guilt. How dare I feel this way when others have it so much worse, and are facing huge obstacles with their darling children. How can I feel sad when everything is ok? How can I feel sad when some mothers, sadly, never took their babies home?

For Joseph, today, I feel nothing but joy. He is properly 3 today, and is just like any other 3 year old.

But for, me, let allow me myself these moments, to feel sad for what I didn't have, for what pre eclampsia stole from me. My pregnancy, my birth experience and my innocence.

Monday, 6 August 2012

There are some amazing bloggers celebrating breastfeeding over the past week, for World Breastfeeding Week. The amazing Circus Queen put a call out for breastfeeding pictures, and I really agonised over it. Did I breastfeed? Would my picture look silly alongside the "real" breastfeeders?

So I did it, I submitted this picture, have a look at the picture Circus Queen has put together, it's awesome.

I always had a little inkling Joseph would come early, and I have to say I was thinking 34 weeks plus, not as early as he arrived. However, I knew that I wanted to breastfeed and that if he was indeed premature I would have to express until he was ready to feed independently.

My midwives, whilst preparing me for my section, advised me that they wanted me to express within 6 hours of Joseph being born, if I was well enough, which I found very reassuring. These midwives knew it was important for me to be at the heart of my baby's care, and that breastmilk was essential for his growth and development.

I also knew it wouldn't be easy, that I would have to establish my supply and put expressing at the heart of everything I did.

At first, Joseph wasn't ready for milk, the research on this is starting to change practice, but at that time the decision was made to put Joseph on Total Parental Nutrition, which I nicknamed Superman Formula! It contains additional calories and nutrients, and goes direct into the baby's system, bypassing the stomach. My milk was given to him in droplets as mouth care, and tiny supplemental feeds.

I took this opportunity to pump and pump and get milk stored up for him. I had loads, too much at first, and I froze it in my neighbour's freezer as our own wasn't suitable, a little ice box at the top of a small fridge. Every morning I'd drop my milk in to Rita and then later would collect it to take to my baby.

I found fitting expressing in very hard work, as our journey continued. It's a very isolating activity, you can't just do it anywhere. I found using a electric pump was a god send, but it sure is noisy, not the sort of thing you can get out at a cafe or even in a rest room.

At around 24 days Joseph was on full milk feeds. It was so exciting to see him on my milk, and thriving on it.

Everything was going ok until about 8 weeks into my journey. I found once I stopped taking my blood pressure tablets, Methyldopa, my supply began to dwindle. I now know that this drug helps boost supply, and now wish I'd just tapered the dose down rather than come off completely. I declined to take domperidone, which can help with supply, as I had had enough of my body being messed with. I did try fenugreek and milk thistle, and I think this helped a little.

Coupled with this, Joseph's weight gain was judged as not being good enough, so my milk was fortified. At the time, I was deeply distressed by the sachets of "stuff" being added to my milk. It wasn't adequately explained to me, and I found that this, coupled with the medication change, affected my supply.

Eventually the decision was made to introduce formula alongside my breast milk, and then my supply just stopped.

What I learned was that information about breastfeeding premature babies is sparse, and it's an integral reason why I am supporting Best Beginnings Small Wonders programme. The DVD that they have produced has detailed advice about expressing and feeding premature babies, based on sound clinical evidence. There is advice, help and support out there but you have to seek it out.

I wrote a post for Aly over at Plus 2.4 about my journey and things I'd wish I'd known or asked for. You can read that here.

Friday, 3 August 2012

It's no secret that I hate competitive parenting. Having a baby who was 3 months early meant that for his first couple of years, he came last in everything. Last to sleep through the night, to sit up, to crawl, to walk. I just retreated a bit, and hung out with the premmie crew, and tried not to worry too much.

It came to my surprise when I started reading and hearing comments from mums of premature babies on various online forums and in real life, almost doing the same, in terms of competitive parenting, but opposite. "How dare can someone who had a baby 6 weeks early be distressed, my journey was so much worse".

I have been visiting the Bliss Forums more
often recently, as many of the regulars have moved on, and there's lots
of new people who need support (hint hint - get back there mums!), and
read a heartbreaking message from a mum of a 34 weeker who wrote:

I have had a fairly easy ride compared to most of you on here (and that’s were the guilty comes in)

I don't care at what gestation your baby was born. There is absolutely no such thing as "an easy ride" if you have had a premature baby. If your baby was 24 weeks or 42 weeks, if you "did time" in special care, whether it be 6 months, 6 weeks, 6 days, or even just 6 hours, you are in "my gang". As much as my blog is called "Not Even A Bag of Sugar" it's not meant to be exclusive. You will notice I never really use the term "micropreemie", any premature baby, and their family, needs support. The act of having a baby who is not well, and is taken away, leaves scars. It's horrible. People "on the outside" often don't get the trauma. Ok your baby came early, and was in hospital, but he came home and was fine.

I can't underestimate the jealousy I feel when I see mums who have just delivered a baby holding them in the delivery room. I will never ever get that very "normal" experience. And neither will those who delivered their baby at later gestations, but poorly and in need of treatment. Like most of us who have had premature babies, I didn't get to see my baby, or touch him when he was born, and that still hurts me, three years on. I won't ever get over that. I don't dwell on it, but I won't ever be over it. I will never ever get that back.

I strongly believe that act of separation scars us. It isn't "normal". One moment our babies are inside, the next they are with strangers in a room far from us, they may as well be in Siberia, they are not with us. And that should unite us, not tear as apart. We shouldn't criticise those who are traumatised because their situation wasn't as "severe" as our own.

Empathy. It's a dying art I think, but surely we should be able to put ourselves in each other's shoes, even if they are not the same size as our own.

Thursday, 2 August 2012

One of the lovely things about being a blogger is that you become a quasi journalist and have access to loads of information and new products. Your blog becomes like your own personal online magazine! I know from my Facebook page that a lot of you have older children, often former premature babies, who now have residual difficulties as a result. I learnt about the Kiddimoto Middi and just wanted to share it with you all.

Joseph, as regular readers will know, has had a few issues with walking. His grandparents bought him a balance bike for his 3rd birthday, and its really helping him with his balance and co ordination. A balance bike looks like a normal 2 wheeler bike but has no pedals, and until you have seen a child in action, its hard to appreciate just how much can be done on it, and the speed a child can go at once they get confident! But his bike is small, by the time he is 5 or 6 he will no longer be using it. In his case he should be ok to move to a bike with pedals. However, I find it reassuring if he is not ready to move on, or unable to, then there is an alternative!

As well as being a mummy to Joseph, I am also a support worker, and have had a lot of experience with children with additional needs, and I know how important it is to find toys and equipment that suits the child's needs, and is still bright, cool and trendy!

For many children a bike with pedals won't be appropriate at 6, perhaps never, and that's where the Kiddimoto Middi comes in, designed for children from 6-12 years who have developmental factors that mean they need a bike that suits their needs. The Kiddimoto Middi has been designed with special needs kids in mind, an all-abilities bike, which I think is just fab!

The Middi is so cool, it comes in two different colour ways, the Union Jack and Pastel Dotty, and is made out of wood, durable birch plywood, with penumatic tyres.

The Middi is priced at £139.99 and will give a good 6 years of speedy riding about!

I requested information about the Middi as I thought it was amazing and wanted my readers to know about it!

Wednesday, 1 August 2012

When I heard on the social media mummy bloggers grapevine that Total Greek Yoghurt were having a session for bloggers at the Cheshire Cookery School, I was green with jealousy! Fortunately for me, my best blogging friend, and afternoon coffee partner Sim at Sim's Life got me on the list!

I have to confess that I am already a regular consumer of Total Greek Yoghurt. I first discovered it soon after I moved to the UK. Initially only the full fat version was available, but being that it's only 3% fat, this wasn't a huge issue. And as we discovered through the talk we were given by Total's nutritionist Martin, fat is not the enemy, your body needs fat to thrive, its keeping that fat low in saturates, and in balance with the other macronutrients that is important. Now there is a 2% a 0% and varieties with honey and fruit purees as well. They are truly delicious!

It's no secret that I love to cook, but balancing all the dietary needs of a family is not always easy. If you have a premature baby, then ensuring they get nutritionally sound, calorie rich food is important. As women we are all concious about our weight, but if we have exercise goals as well, knowing what to eat can be a minefield, and then as we get older too, our nutritional needs can change.

What I love about Total Greek Yoghurt is that its very versatile. It has a rich creamy mouth feel. Substitute Greek yoghurt for cream in your curry and instantly you have reduced the calorie count and made it nutritionally more balanced. Make a cookie crush with the amazing cookies we baked on the day, with Greek yoghurt and you have a dessert far more rich in nutrients than say tiramisu, but with a similar mouthfeel. You have saved calories, added rich sources of fat that make you fuller longer and supply your body with nutrients, without feeling deprived.

We learnt other tricks too. Controlling carbohydrate intake is a challenge for many of us. This is what we served our Thai Green Curry with. Looks like rice yes? It's cauliflower. You grate or battle with a food processor and whizz up the cauliflower, bung it in a bowl, cover with cling film, pierce the cling film, and throw it in the microwave for 4-5 minutes, with NO water! Hey presto!

The focus of the day was cooking healthy meals for weightloss, good nutrition, and meeting exercise goals, not specifically feeding babies or small children, but I will definitely share some of the ways I use Total in a seperate post.

I cannot tell you just how many recipes and good ideas are on the Total website, so go and have a look and a browse and give it a try!

Here is the simply brilliant cookie recipe!

Chocolate Chip & Almond Cookie Cream

By Martin MacDonald

Ingredients

100g TOTAL Greek Yoghurt (to serve)

2 Medium Free Range Eggs

1 tsp Vanilla Essence (at home I would use extract or vanilla bean paste)